Food and wine for the spirit, not just the body, as I ponder a way to die

Gillian Mears

"If unbearable indignities arrive before legislation endorsing voluntary euthanasia, I imagine I'll have no choice but to take my end into my own hands" ... Gillian Meares. Photo: Angela Wylie

Not a day goes by that I don't wish that I were dead. It would be so much easier than living in a body beleaguered now by advanced multiple sclerosis. I'm in my 17th year of living with this disease and I've very nearly had enough.

These days, I get up at three in the morning. No point to even attempt to sleep in for, somehow, my once lovely horse rider's legs are doing their best to resemble a pair of warped crowbars. Sometimes I can't find the strength to untangle them for 10 to 15 minutes and I swear and howl. What do they think they're trying to be? The Little Mermaid in terrible reverse? My legs pleaching into a tail.

Most days, I wake disappointed to do so, disappointed that I haven't peacefully died in the night. I look at the clock, calculating how long until the first carer of the day arrives. As the noisy miner birds make their first attack on my cat, I know it's less than 40 minutes.

Some mornings are haunted by the ways to die outlined in Philip Nitschke's The Peaceful Pill Handbook. Grotesque images of how best to put your head in a plastic bag to successfully suffocate. The exact angle to put the tip of a rifle in the roof of my mouth. Mexican Nembutal that may not work. These images are as distressing as recollections of my grandfather's death at 50. He'd had MS more than half his life. Before they put him on the top floor of a hospital for incurables, they amputated both his legs at the thigh. Easier to look after adult incontinence without a pair of legs turned into crowbars. Soon after that, he went blind. Then buried at 50. It's not a track I want to follow. I'm 48. I have an advance directive attached to my will aiming to guard against such an unenviable fate.

In April 2007, I was in the audience for an SBS Insight documentary on voluntary euthanasia. A man whose glamorous mother, a Greta Garbo stand-in, had been a member of the original Hemlock Society, sat beside me, booing and hissing every utterance from Christopher Pyne, the then federal minister for the ageing.

I fell quiet. For I was, in fact, having the opposite reaction. So much so that the very next day found me penning a congratulatory note to Pyne for his anti-euthanasia stance. As anyone who knows my writing would know, I'm not, nor ever have been, of the same political persuasion as Pyne. I'm no friend of the fundamental religious right. Hadn't an Alan Jones/Fred Nile vendetta resulted in one of my books being struck off the HSC syllabus a while ago?

Yet in that letter to Pyne, I think I even said he'd shown such intestinal fortitude in among the angry, death-desiring mob, maybe he'd yet be PM.

When I wrote that letter, although 12 years into MS, I remember my exasperation with some of the MS sufferers in the Insight audience that night. My inner horror at their zealotry to mark themselves not for resuscitation.

It is a dog story that explains my about-turn on euthanasia.

My original publisher, Bruce Pascoe, had a lean, black, half-cross kelpie, Reg, which was the master of irony. He could roll his eye in amusement and look up at you, checking you'd got the joke.

Nothing ironic, though, about a deep-seated bone cancer in the right hind. In time, nothing for it but Pascoe knew he had to call the vet because Reg was through with conversation. He would no longer meet his master's eye.

In this case, though, Reg died with his head in Pascoe's lap at home. Not full of the dread and terror provoked by a routine visit to the vet. Unaware even of that final needle slipping in.

I think it is harder to discuss as openly the death of people. But why?

The older I become, the fussier I seem to grow regarding what will constitute my last mouthful of any meal. I aim to always make it delectable. The crispy sliver to finish a Sunday pancake. The succulent last forkful from a barbecued snapper.

I want the last mouthful of my life to be similarly delectable. If unbearable indignities arrive before legislation endorsing voluntary euthanasia, I imagine I'll have no choice but to take my end into my own hands. Although my little sister waxes as lyrical as any Farley Mowat short story about the ease of dying in the snow, were she to assist in building me my last snow cubby, or in trucking me up to Kosciuszko, she'd be charged with my murder.

If only I could I'd screw up that hand-penned letter to Christopher Pyne.

Or I'd now elaborate to him: if you've ever been put under a general anaesthetic, isn't it a marvellous thing? In the hands of a kind anaesthetist (and they universally seem to have that gift of kindness) joking about the moment as the needle slides in being like a loving merlot; a good South Australian shiraz. What a bold wonder it is, that whole process. Out like a light.

This is an edited extract of author Gillian Mears's submission to the NSW hearings on the Rights of the Terminally Ill Bill.

88 comments

Thankyou Gillian for sharing yourself.I've always felt we should all have the right to die, when and how we want.Watching my mother suffer in a vegetive state with Parkinson's last year further entrenched that view. So many times I felt like reaching for the pillow.On a recent visit to MONA I sat and pretended to use "the exit machine" an exhibit there, interesting what you think whilst doing so.Best of luck and may that last meal be sumptuous, and at a time when you choose- not the govt or the dogooders.

Commenter

A country gal

Date and time

February 18, 2013, 11:32AM

Can you explain how the Government or the do gooders are choosing when somebody dies from their disease or ailment?

My view of what you're saying is that it's the disease or ones body that decides when one can't go on even if the will is no longer there.

Commenter

Sid

Location

Sydney

Date and time

February 18, 2013, 12:13PM

If an animal is sick we put them down as to not make the pain worse. We are treated worse than animals.

Commenter

Bazza

Date and time

February 18, 2013, 12:57PM

Sid, the govt and dogooders are denying proposed euthanasia laws to be legislated. gall what happened in the NT.If you are naive enough to think disease knocks you off when it's done it's job, more the fool you. So many people are kept alive by drugs, machines and equipment.My account of my own mother is testament to that, her disease Parkinson's would've killed her years previously if she had not kept taking the drugs. Her last 7 months was the most horrendous and cruelest thing I have ever witnessed. In her final days all she could do was blink one eye and breath.She could not stop the treatment she was receiving, and the Drs religion played a part in that. My fathers death was more humane thankfully, still horrid though. if he had let his prostrate cancer take it's natural course he also would've been dead years prior. In the end he said enough and refused treatment and food/water. We should not have to do that. We should be legally available to end our existence and for some that means assistance.Just like my beautiful Labrador needed the vet to go peacefully.Crikey!

Commenter

A country gal

Date and time

February 18, 2013, 1:41PM

Beautifully articulated, Gillain. It is ironic that as a supposedly civilised society we spend so much time pontificating about human rights whilst simultaneously denying those very same rights to intelligent adults. In many cases, forcibly keeping people alive in pain and anguish is indistinguishable from torture.

Commenter

John M

Location

Land of the living.

Date and time

February 18, 2013, 11:38AM

Such a beautifully written piece of writing regarding the change in her conscience on her own suffering and absolute right to die. The writer is the same age as myself which I find confronting. Mortality is a subject Australian society hides under many euphemisms. I hope Gillian Mears' brave letter will influence people to think twoice and vote for a bill not for themselves, but for the right to die of others.

Commenter

David

Location

Sydney

Date and time

February 18, 2013, 11:42AM

I totally agree. There have been a couple of times while awaiting operations when I felt that this is the way I want to go.

I really did not care if I woke up or not.

A nice warm blanket and an injection. Just drop off nice and peaceful. Beauty.

Commenter

Tc

Date and time

February 18, 2013, 11:43AM

Why do the supposed masters of morallity and ethics, all those god fearing types like Jim Wallace and George Pell and their puppets in politics, oppose Euthanasia? It looks to me like we as a society torture our weakest and sickest, preventing them from ending their suffering by opposing euthanasia. I don't support or condone torture, yet it is morally and ethically correct to do so here, according to these people. Why we listen to their ignorant views of these people? These godbots, who condemn euthanasia but can't seem to understand or speak out against and deal properly with criminals pedophiles in the clergy is well incomprehensible me.

Commenter

Rhino

Date and time

February 18, 2013, 11:48AM

You bring tears to my eyes Gillian. When do we start allowing people to take control of their own lives, especially at such times. Your bravery in your suffering is inspiring, but how sad and ironic that Reg the dog gets better treatment than you do. When will we get a government with enough guts to stand up on this issue, its not as though it is going to be compulsory. My thoughts will be with you.